a family in the making

Doctor Visits

You guys, have I told you lately that I love you? For real. Your comments on my last post were just beyond. Not to mention my friends in real life that reached out to me as well. Thank you everyone. A million times over.

Last Tuesday I had my Skype consult with Dr. Braverman and found out the results of my immune testing. Basically, all the findings were consistent with endometriosis. This is pretty good news overall – there’s nothing else more sinister lurking on the sidelines.

Warning: I’m about to get very long-winded and detailed. I want to share as much as possible in case I can help anyone on the interwebs searching for information.

This does not mean I have any of these things–it just means I have the genes that would allow them to develop. Or something. I’m disclaimering right now that I barely understand all of this immune biz, so most of the explanations in this post will likely be at least semi-bogus.

Other things that are awry in my immune system:

My white blood cell counts are a little low. This is consistent with endometriosis, but I forget why.

My anti-cardiolipins are still testing as highly positive.

My natural killer cells and CD8+ T-cell levels are through the roof. Both are in the 98th percentile. Meaning, of all of Dr. Braverman’s patients, 2% of them have higher natural killer cells and CD8+T-cells than me. Whoa.

So why is this significant? Basically, both of these types of cells are totally normal. Everyone has them in their bodies. They fight off cancer, viruses and the like. But if they are too active, they see an embryo as a foreign body and kick it out.

To sum it up: I have endometriosis. This negatively impacts egg quality for a variety of reasons, two of the main ones being that it creates inflammation in the reproductive organs and also messes up the mitochondria in my eggs. This makes it really hard to produce eggs that actually turn into babies. Then, on the off chance that I do make a healthy embryo, the anticardiolipins, natural killer cells and CD8+T-cells kill it. On many levels, my reproductive system is – no, was – screwed! Was. It’s a whole new world now.

What Dr. Braverman suggests:

Luckily, everything that he found is straightforward to treat! Huzzah.

The first step is to remove the endometriosis, which I have already done.

Next, we wait two cycles in order for the inflammation to die down. I’m a little less than halfway through this.

Then he recommends another IVF cycle. As some of you know, I have an embryo still frozen at my old clinic. He said it’s not impossible, but very unlikely given what we know, that this embryo is genetically normal. So he recommended holding off on transferring that one for now.

After the IVF cycle we’ll freeze all embryos, ideally on day five. Apparently, the drugs from the IVF will make my immune response worse, so no fresh transfers for me. He then wants to do something called mitochondrial testing on the embryos. This is apparently a brand-new test. Instead of genetically screening the embryos, it tests only the mitochondria, which is apparently the most important factor for endometriosis patients. I’m not sure if we’ll do this yet. I need to look into it. He does not recommend traditional genetic screening.

Intralipid IV infusions (this is, like, straight-up fat, I think. I don’t even remember what it does, but it sounds like some mad scientist hootenanny. Sign me up!)

All of this will be done at our new clinic, with Dr. Braverman consulting on the frozen transfer. The new clinic is about an hour away from us, which is a major downer, but our old clinic won’t work with outside doctors, and this one does.

Other recommendations from Braverman for patients with endometriosis:

Cut out gluten (I’ve been gluten free for a year or two now, so we’re good there.)

Cut out dairy (I’ve also been dairy free for a while. Dr. B. says a little dairy every so often is fine. It’s not as much of an issue as gluten.)

Eat organic

Take a crapload of supplements.

Here’s the supplement list, if you’re interested:

Pycnogenol and Resveratrol (antioxidants that reduce oxidative stress and lower reactive oxygen species in the follicle, improving egg quality)

Melatonin (an antioxidant — it has been shown in the literature to increase the number of FSH receptors on the follicles in patients with endometriosis. I may not be able to stick with this one, btw, as it appears to be exacerbating my asthma)

VSL#3 probiotics (to lower the level of inflammation by increasing the production of IL10 in the blood. If anyone knows what IL10 is, let me know.)

Fish oil with Omega 3 (didn’t get an explanation for this)

Mitochondrial optimizer (helps to improve mitochondrial function in the egg, which increases the competence of the nucleus. This leads to higher euploid rates and better embryo performance)

Vitamin D3 (to help decrease natural killer cell activity)

Greens formula (didn’t get an explanation for this)

General notes:

He said that, after surgery, I have about a one-year window until the endometriosis comes back.

His official word is that one cup of coffee a day and drinking socially is fine. He’s firmly in the everything-in-moderation camp. So, guess what guys? If I want a friggen glass of wine, I’m having a friggen glass of wine. No more guilt!

He called me young! Well, kinda. When I asked him if I should be taking DHEA, he was all, “That only works for older women, not women who have diminished ovarian reserve for other reasons.” Consider my life made. It’s not often that 38 is classified as a younger woman in the fertility world. I’m taking that and running with it.

Whew! Are you still awake? I am, but only barely. If you’ve read this far, you are a rock star.

And with that, I’m signing off. Must go to bed. Tomorrow we meet the doctor at our new clinic for the first time. I hope we like him (and the clinic) because we really don’t have much choice in the matter.

I am now officially a patient of Braverman Reproductive Immunology. Last week, I sent an email to my local clinic telling them I would not be proceeding with my planned IVF. I felt legit sad writing this email, as I’ve become quite attached to everyone there. They are a class act — kind, compassionate and just generally awesome. But alas, it is time to start a new chapter.

That new chapter begins next week. Bright and early Wednesday morning I’ll head to Braverman’s NYC office to have blood drawn for immune testing. 15 vials of blood, to be exact. I asked. The lab rep was like, “Wellll, I usually don’t like to tell people this ahead of time, but…”

Tim is getting three vials drawn, by the way. A mere three.

After bloodwork, I will meet with the surgeon. He’s going to check out the blood flow to my uterus using a doppler ultrasound. I told my boss about this today and she was all, “Oooh, will it be like a weather map?” I don’t know the answer to that, but I sure hope so. Uterine weather map! Just what every gal’s always wanted. Anyway, apparently this doppler ultrasound can help detect endometriosis. Based on that and the rest of the examination, he’ll assess whether I need surgery — if I do, I’ll get it the next day. Unless he’s like, “Hey girl, you do not need surgery. You have the prettiest uterine blood flow I’ve ever seen,” I think I’m going to go ahead with it. I’d really like to know beyond a shadow of a doubt if I have endometriosis.

After surgery, if it ends up happening, Tim and I will stay in a hotel for a couple of nights while I recover. Staying in a hotel near New York isn’t cheap, so we’re pretending it’s a mini vacation. This “romantic getaway” will be our birthday present to each other this year (we both have birthdays in the summer). Surgical vacations, guys. They’re all the rage! Seriously, though, I’m kind of looking forward to a few quiet nights in a hotel, even though I’ll likely be in pain and doped up on opiates. I’ve clearly lost my mind.

That’s about all I got. I won’t actually meet Dr. Braverman this visit (or maybe never, as we will likely get our immune testing results over Skype), so that’s kind of a bummer. If you could send good thoughts my way on Thursday, the day of surgery, I will love you forever. Well, ok, I already love you forever, but I promise to love you forever-er.

Disclaimer: This is fairly boring post that you may want to skip if you’re not interested in the details of IVF or miscarriage.

We had our what-the-f*ck-happened appointment with our doctor on Monday. I had a two-page list of questions prepared, starting with the IVF cycle and ending with the miscarriage. Here’s what we learned:

I did not respond to the IVF meds as well as my doctor thought I would. She initially started me out with what was a higher-than-normal dose because she was worried there might be some after-effects of the cyst. She said she was prepared to lower the dose, but instead ended up having to up the dose. She said this could indicate that I had lower ovarian reserve, despite the fact that my FSH and AMH (two tests they use to predict ovarian reserve) were good. I guess ovarian reserve is a big predictor of IVF success. The more you have, the more likely you’ll be successful. And the opposite holds true for low ovarian reserve — less chance of success. So, yeah, great, possible secret low ovarian reserve. That’s definitely what I wanted to hear. I’m not even sure what to do with that one. I feel a little blindsided by it. I don’t understand why my tests would be normal, yet my ovarian reserve is still possibly jacked.

If we do a fresh cycle going forward, she would continue with the same protocol as the first time (estrogen priming with no birth control pills), but start out with the higher dose of meds than I ended up with last time.

As far as the recurrent miscarriage tests go, the ones that came back so far were normal, save for one of the blood clotting ones, which was slightly elevated. She said that could just be attributed to still being pregnant, though, so they will retest me once my hcg drops to zero. The genetic karyotyping that Tim and I had done is not back yet. There are also several other tests that she wants to do, but she again wants to wait until my hcg is at zero.

Apparently my last hysteroscopy showed a slight heart-shaped uterus and a slight septum. Either of these things could have contributed to the eccentric embryo implantation, which could have contributed to the miscarriage. She said that the hysteroscopy findings previously did not worry her because I’ve had a successful pregnancy in the past. But now, based on the fact that I’ve had the wacky implantation, she may recommend surgery to get the septum removed. Sweet, another possible procedure. She’s going to see what the results are of my next hysteroscopy are before she makes that decision.

I had a D & C on Thursday (more on that in another post) and they are going to genetic test the “products of conception.” Lovely term, right? Apparently, it isn’t a sure thing on whether they can get reliable test results or not (I’m not clear on why), but hopefully we’ll get some more information.

Because I’ve had two losses, my doctor suggested that we pursue genetic testing if we do another fresh cycle. Apparently, if there are no other underlying issues, blastocysts that are genetically normal have a 70% chance of resulting in pregnancy.

We basically have a few options going forward:

1) Use the frozen embryo we have and don’t genetic test it.

2) Use the frozen embryo we have an attempt to genetic test it. If it’s already hatched when it thaws, then it can’t be tested.

2) Do a fresh cycle and genetic test the embryos we get during that. We can also defrost the frozen one at that time and test it with the others, if it can be tested.

Right now we are leaning towards option three, a fresh cycle. I’m not sure what we’ll do with the frozen one yet — that’s what we can’t figure out. I don’t want to end up doing something that will waste it somehow. I would hate to thaw it, find out it can’t be tested and then have to re-freeze it and risk damaging it. It very well could be totally normal. It could be our take-home baby, but I’d like to have some backup in case it isn’t. There are just so many unknowns here, it’s hard to know what to do.

I think the results of our recurrent miscarriage panel and whatever we learn genetically about the baby that I miscarried will help guide our decision as well. It could be well over a month until all of that comes back, so for now it’s all speculation.

Regardless of what we decide, I’m benched from starting another cycle, be it frozen or fresh, until at least mid March. I have to wait for my first period so my lining can repair itself after the D & C and then I have to get another hysteroscopy. So I won’t be able to start another cycle until my second period after the D & C. Plus, who knows how long this potential uterine septum surgery could delay things

And that, my friends, is what’s getting to me the most about this whole experience: waiting, waiting and more effing waiting. I just want to be moving forward. I feel like time is one thing that I don’t have the luxury of right now.

At least two more months for another chance at getting pregnant. That’s just for another chance! And if that chance doesn’t work, more waiting. And even if it does work, it doesn’t mean I’ll have a healthy baby in nine months. I know that, in the end, this period of infertility will just be a few years out of my entire lifetime, but right now I’m struggling to see anything beyond the waiting, uncertainty and heartache.

Tim and I sit in the Melrose diner. Pictures of horse-drawn carriages and clip art signs advertising pies cover the chrome walls. Our booth is leftover from the middle of the last century, its maroon panels aged by time and sunlight and decades-old cigarette smoke.

I order an omelet with no cheese, hold the toast. My mug of decaf comes within seconds, along with a bowl of half-and-half cups. I open one and then hesitate. I hold it in my hand and watch the cup steam until our waitress comes back. I ask if she has any non-dairy creamer, even though I know it’s a ridiculous request in a place like this.

I wonder what the consequences will be if I add the creamer. I’d given up dairy and gluten months ago because it did not agree with my body, but now I hold onto this abstinence like a talisman. These days, my head is an endless game of if/then. If I don’t touch a drop of dairy or a speck of wheat, then I will get pregnant. If I stray, then I won’t. The rational part of me says this is not quite right, a little too extreme, but then another part says, but what if it’s not? How do you know?

I drink the coffee black.

Grey-haired couples dot the booths around us. They sit at the counters and talk to the servers. They exchange gossip, tsk-tsks and an occasional bark of laughter. They order their own regimented meals, the same ones they’ve been eating for three decades: a lone pancake on a plate, one egg over hard, a small cranberry juice.

We’ve arrived at the diner after an early morning doctor appointment. “Likely what happened,” the doctor had told us just a few minutes earlier, “is that you were pregnant for a very short time, maybe a day or so, and then you miscarried.” His back was turned to us as he said this, his fingers clacking on the computer keyboard. “We’ll never really know, though.”

This doctor, his hair white from years of medical experience, is the hotshot at our clinic. He won Best Philadelphia Doctor in his field a million years running in a handful of magazines. Arguably, he’s the best of the best. But all he could really tell us for sure is that he doesn’t know.

Before our meal arrives, I walk to the restroom. I stop to look at myself in the mirror. Though I’ve just turned 37, I feel as old as the couples out there with their reedy laughter and their one pancake. I trace the wrinkles around my forehead, my eyes, my mouth. My face is thinner than it used to be. My hair is not quite as shiny. I can’t help but wonder if my insides are the same—if my eggs are weathered with time, chromosomally abnormal, unfit. I imagine my body rejecting them one by one, like skipping stones sent out across a still pond.

—

Back at home, my daughter is learning how to ride a bike. Her chubby legs barely look strong enough to support her big toddler belly, let alone a bulky metal frame. She is freshly two years old. Her hands are like tiny white starfish, her eyes blue points of light. Every time she laughs, my heart fills with a bittersweet mix of joy and desperation. I want to capture her unruly curls, her jumbled sentences, and the feel of her hand as she strokes my face and says, “Gentle, mama.” If it turns out that she is my only one, my only baby, time should at least slow for us, right?

She is unsure on the bike at first. Her dad steadies her, his back in a deep arch, as she steps and wobbles. She makes a few rounds around the house like this, smiling at her grandparents and me when she passes by. Then Tim releases her and she’s off, her hair like flames in the late morning light as she moves away from us.

But I digress. Since the miscarriage I’ve been having some cycle weirdness. (I originally went into more detail here, but Tim was like, “Whoa, dude, that is waaaaay too much information.”) It’s been six months since the miscarriage, so I figured I better get myself checked out.

We saw the same doctor as last time. She was equally lovely this time. The first thing she said when we walked in the room was, “You guys look like you’re aging backwards.”

After exclaiming, “aw, shucks,” I explained the situation with my bod. She said my problem was probably due to progesterone. The short explanation is that if the body doesn’t make enough progesterone when it’s supposed to, it can’t sustain a pregnancy. The doctor sent me home with a prescription for progesterone supplements and told us to come back in two months. If Lettie’s sibling has not been conceived by then, we’ll start fertility testing.

I left the appointment feeling pretty good. The doctor didn’t seem worried, so neither was I. Gradually, though, the anxiety crept in. What if I have premature ovarian failure? What if I have endometriosis? This quickly spiraled into, holy crap, I have to wait two months to find out any of this? Are you kidding me?

In January, I visited a tarot card reader. She told me, among other things, that I wasn’t going to get pregnant at all in 2014. Awesome, lady. Thanks. She said that instead of focusing on expanding my family, I should focus on sinking into the life I have now. I think sinking in is great advice, for me or for anyone. I love my life. I want to enjoy every second of it. And I certainly don’t want to pass up the good I have in front of me because I’m busy stressing out about possible futures. That’s just dumb.

But I also know that I’m not going to stop wishing for our fourth family member. Because I want Lettie to know the love of a sibling. Because I have a big ole heart with so much more love to give.

I need to find a balance.

The truth is, I’m finding it harder to feel positive this time. I’m older than I was the last time around. Everything in the fertility world takes time, and that’s the one thing I feel like I don’t have enough of. I know I still have a few more years until my fertility technically plummets, but it’s already been almost a year since we first began trying for baby number two. I blinked and that time went poof.

I’m going to do my best to cool my jets, though. I’m walking proof that everything happens when it’s supposed to. I met Tim six weeks before my mom was first diagnosed with cancer. I gave birth to Colette three weeks before my mom died. I was magically given the greatest gifts of my life just when I needed them most. I’m not trying to say that I need to wait for a tragedy to have another baby. Let’s pretty please hope that is not the case (Okay, universe? Okay?!). I’m just trying to say that I need to chill the eff out and have faith.

It’s been way too long since I’ve talked about my ovaries. I know you’ve been waiting in anticipation, so I won’t leave you hanging any longer.

First things first: this visit was not as awesome as the last two. The doctor was an hour behind and rushed and short with us. I know she doesn’t need to be our best friend or anything, but since fertility is such a sensitive and intimate subject, it’s upsetting to me when doctors are anything less than friendly and focused.

I showed the doc my data for the last three-and-a-half months and all looked well. Except: the luteal phase. The luteal phase is the time between when you ovulate and when you get your period. Ideally, it should be around 14 days, but no less than 10. Mine were about 8, on average. The theory is that if your luteal phase is too short, an embryo might not have enough time to implant, even if the egg is fertilized.

Thanks to this great book called Taking Charge of Your Fertility, I had suspected this luteal phase business was a problem way back when, long before I saw the specialist. But I was hoping that since I had recently stopped taking birth control pills at the time, my body would regulate itself after a few months. Obv, it didn’t happen.

The doc gave us three options:

1. Do nothing for three more months. I could still get pregnant despite my short luteal phase.

2. Have my cycle monitored for a month to provide the doctor with more accurate data. This would require an ultrasound every other day from day 12 ’til whenever I ovulate. Then take no further action for the next two months.

3. Have my cycle monitored for a month and take a progesterone suppository for three months. Not enough progesterone after ovulation often causes short luteal phases, so the suppositories would hopefully take care of that. This third choice is the one the doctor was leaning towards.

At the end of this three-month journey, if I’m still not pregnant, she wants us to try Clomid, which is a medication that makes you ovulate earlier. It also has many side effects, including a 5-10% rate of multiple births. 10%? Um, that’s one in 10. That’s kind of a lot. And sure, twins would be sweet. But twins also mean a potentially more complicated pregnancy and that is scary stuff.

She also emphatically said to not take the herbs my acupuncturist prescribed me. I am particularly bummed about this because I really wanted to try them. In the end, though, I don’t feel comfortable going against her super-strong recommendation. She says the herbs aren’t regulated or tested, and I see her point, of course. But Chinese medicine has been around for thousands of years. It’s got to be doing something right, no?

So that about sums it up. I found myself crying in the car after this visit. Part of it was probably because of the rushed manner of the doctor, but I don’t think that’s enough to justify tears. Tim asked me if I could pinpoint why I was so upset, and at the time I really didn’t know. But now that I’ve had some time to think, I’ve arrived at this conclusion: short of doing nothing, either option we choose means I am officially starting down the scary road of fertility treatments. And even though I can get off that road whenever I want, it still feels like I’m choosing a path and I’m committing to following it.

Also, while Tim and I can talk to death about which option to choose, ultimately the final-final decision comes down to me. Because it’s my body. And right now that feels like a lonely place to be.

What will we do? I don’t know. They always say to listen to your gut on these things, but right now my gut is a jumble of confusion. They also say that doctors don’t know everything and you don’t need to listen to them all the time. And this is true, but doctors also have the benefit of knowledge and experience that I don’t, making it really tricky to know when not to follow their advice.

Should I do something or do nothing? Should I be patient or proactive? Am I starting down the road to fertility treatments too soon? And finally, do any of those other things matter if there’s a healthy baby at the end?

What did she say? It was pretty much good news all around. My latest round of hormone tests came back normal, which means I don’t have to get a brain MRI. Score! Tim’s swimmers are all normal as well. Double score!

She did an ultrasound and some blood work to see if I’d ovulated yet this month (isn’t it crazy how they can tell that?). The ultrasound came back inconclusive and the blood work showed that ovulation was a no go. This was a downer, as it had been several weeks since my last period. Even though the doctor warned me not to expect a regular period after not getting one for four months, I was bummed.

But! Thanks to these handy-dandy things called ovulation predictor kits, I discovered that I did ovulate a few days after the visit. So while I’m not totally back on track, I’m definitely heading in the right direction. A small victory, but a victory all the same.

Before you start to get worried: I promise I will not share with you every time I ovulate. Gross. This is a special case, though, as it was the first time since the Great Fat Experiment began.

Anyway, the doctor turned us loose for the next three months, instructing me to a) keep eating the fat and b) track my cycle. At the end of the three months, we’ll reconvene and assess.

And that concludes the latest edition of Ovary Digest. Until next time…